Kennadie Marie Ellis
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UPDATE 43
April 6, 2023
Well, things go from bad to worse for the kids. It was time for Kennadie to come home from the hospital. She’s doing quite well thanks to the wonderful nurses and her team that have taken care of, loved and snuggled with her at Essentia PICU.
Sara, Tyler & Kennadie live in a mobile home, and like every other house it’s got a layer of ice and then snow on the roof. The ceiling in their bedroom is starting to cave-in, ice and snow are melting and have went down the walls. While moving stuff around and cleaning, Sara found the floors are too. There’s mold on some of the walls. Their insurance will not cover any of it.
Obviously, they can’t live in there so they have moved in our place until they can find somewhere that they can afford.
The biggest news today is, KENNADIE IS 1 YEAR OLD TODAY!! Our amazing, beautiful loving little ‘Dolly’ has beat the odds!! What a fighter this little girl has been. We thank God for her everyday.
I’m adding some pictures of her in her birthday outfit and tasting some frosting and just Dolly and her many faces❤️
hanks for for all your support and prayers. They are definitely needed now for the whole family.
UPDATE 42
March 12, 2023
Kennadies fever finally went down last night. She had a goodnight of sleep and woke up happy giving nurses smiles. She still has a trach infection and is doing better but we all know how quick she can turn around.
Before Sara & Tyler got there this morning, the nurses had given Kennadie her ‘bath’. Later this afternoon they came back and fixed her hair!!
Enjoy the many faces of Dolly since she’s felt better.
I can’t wait until she gets home. Until then, thanks for everything. All your prayers,friendship and support means the world to all of us.
UPDATE 41
March 10, 2023
Kennadie is still in the hospital. She’s been a pretty sick little girl. Her temperature yesterday was up to 102.9. Her heart rate went to 190.
They needed to test her blood a few times yesterday but no one can find her veins. The doctor and nurse both tried many times and were unsuccessful. It had to be squeezed out of her foot. My little Dolly was crying so hard. Gramma had to leave the room because I was crying too.
She has a trach infection and not sure if the UTI is gone yet.
She could possibly have sepsis but hopefully they’ve caught it in time with antibiotics.
Today they are keeping her a little bit sedated. When she’s awake for too long she gets very angry and cries. Then her heart rate goes up and her oxygen goes down.
I cannot say enough good about the doctors and nurses in the PICU at Essentia. They are wonderful. The nurses all want to take care of Kennadie. The doctor/doctors will talk with us as long as we want. The doctor yesterday was very worried about her, she never left Kennadie’s area. It was a very rough day for everyone. Let’s hope and pray the fever breaks soon and ‘Dolly’ gets back to her normal, sweet, beautiful self
We thank you all for your prayers, concern and support. The power of prayer is amazing!!
UPDATE 40
March 8, 2023
I keep hoping I don’t have to write about Kennadie for a while.
On Saturday about 11:30 pm the nurse woke Sara up. She heard rattling in Kennadies chest and back. Sara had been taking her temp throughout the day, it was a little high but we all know with Kennadie things happen in a hurry.
Sara had given Childrens Hospital a call and they said to give her the nebulizer treatments and watch her.
She wasn’t doing the best when the nurse woke Sara up. There was also a horrible incident involving the nurse and Kennadie so 911 was called.
Kennadie was taken by ambulance to Essentia in Duluth. They actually kept her and are getting a team of doctors together for her!! We’re so happy for that. The nurses are fighting over taking care of her. They all think she is so cute. Sara has caught some of them holding & cuddling her. ❤️❤️
Almost forgot, she has a traech infection and a UTI. They are also going to do a baby bone scan on her.
We’re very happy with the care she’s receiving so far at Essentia. The nurses and doctors have been great!
Your prayers and support have been wonderful, thank you all very much!
UPDATE 39
February 18, 2023
Short update. Sara and ‘Dolly’ are home! We picked them up today. Kennadie of course, absolutely hates her car seat. Steve drove Sara & Kennadie, Tyler had his semi & I had my car. It was a long ride for Sara.
Kennadie probably would have been home sooner if they wouldn’t have touched her shunt. We still don’t know what the reason was for turning it down in the first place.
Another trip to the ER and a CT scan showed that Sara did finally pass her kidney stone but is still not feeling the best. ER Dr figures she’s having muscle spasms from the stone.
I just wanted to show pictures from our FaceTime a little while ago. She had a good nap after she got home and woke up so happy!!
Thanks for your support and prayers. It is always greatly appreciated!
UPDATE 38
February 14, 2023
Quick update. I spent the last 2 days with Sara & Kennadie at the Childrens Hospital. Sara ended up in the ER with another kidney stone. Stress must be bringing them on. She’s been sick and in excruciating pain. They want to do surgery if it doesn’t pass but Sara says NO!!
Besides the infection at her trach, Kennadie also has a UTI. She’s on a strong antibiotic, steroids and only they know what else. Sara isn’t told when they give her something new so we have no idea why she’s on some of them.
After turning down Kennadie’s shunt, she’s become very angry, in pain and doesn’t respond to anything, not even Sara. Her eyes twitch and roll back in her head. Her head swings back and forth.
Today they turned the shunt back to what it was. It may not be worked out of her system yet because this evening was much of the same with her eyes and not acknowledging Sara. Doctor says it may also be due to the steroids. We hope by morning she’ll be feeling better.
Thanks for all your support, kind words and prayers. It’s appreciated very much.
UPDATE 37
February 10, 2023
MRI today showed the ventricles have gotten larger which could POSSIBLY mean her shunt is blocked. They are going to turn down the shunt and will do another MRI on Sunday. If the adjustment doesn’t work, they will have to replace it. They replaced her g tube today.
Results just came in, there is high counts of 2 bacterias at the trach. Antibiotics will be started.
UPDATE 36
February 9, 2023
I was hoping not to have to write this again. Kennadie was taken by ambulance this morning to Essentia. It was too foggy for Life Link at the time.
Sara asked me to come over at 4:00 this morning. Kennadie was very upset and couldn’t be calmed down. She had a small fever and her heart rate was going up pretty high. 911 was called, Grand Lake Fire Department of course was the first one there. The Mayo Clinic ambulance came shortly after along with 3 more Fire Department guys and 3 Sheriffs. The Sheriffs escorted the ambulance to Essentia.
At home Kennadie’s eyes were spinning. That usually means she’s having a seizure from a fever. Her temp was 102.7. She was given a seizure medication at Essentia. Within a short while her poor little body started jumping all over. It’s so hard to watch and not be able to help or hold her. They gave her a second dose of seizure medication. It took a little but her little body calmed down.
Life Link arrived at Essentia but took their time as weather In Minneapolis had not cleared yet. They got Kennadie all hooked up to their equipment, put her on their transport bed, strapped her in and off they went with our little girl. Our tears were rolling even though we knew she was in excellent hands now.
She still has a fever and no known reason for it. FaceTiming with Sara, Kennadie looked much better but she’s not out of the woods yet.
Thank you for your prayers and support and please continue. ‘Dolly’ is our little miracle and has pulled through so much. She can do it again!! She is loved by so many.
UPDATE 35
January 31, 2023
It’s been a while, I know!! Kennadie has been doing very good besides not sleeping. Sara has had very very little sleep, some nights, none. Kennadie’s secretions are the worst of her problems at the present.
We took her to audiology last week. We were there close to 3 hours in the room. Kennadie was in her car seat the whole time. She absolutely HATES her car seat. She throws fits the whole time in the vehicle and as long as she’s in it, look out!!
At the 3 hour appointment they put 2 electrodes between her eyes on her forehead and one behind each ear. There is supposed to be 4 levels of tests on each ear. They got one test on one ear done in 3 hours! Ugh! But the test should she can hear low frequencies in her right ear! We knew she could hear something. We’re not looking forward to the next appointment.
Other news: Sara will now have some help. There is a young guy nurse going to work with Kennadie Mondays and Tuesdays. There’s a possibility there may be a nurse willing to help out nights. That would be so awesome for Sara.
I will try to write more often but I hope you enjoy the pictures of my Dolly and her many faces. ❤️❤️
As always, thank you for your support and prayers. We all appreciate it very much!
UPDATE 34
November 23, 2022
It’s been a long 24 hours. Kennadie arrived at Childrens safely last night. She began having a fever and her heart rate was up. Her temp went to 105.9 today. Her heart rate went as high as 270. She’s had seizures all day.
Blood & urine were drawn today. They won’t have results on them for 24-48 hours. An MRI was done today, that looked good. They did an echo which showed the left side of her heart working well, the right side of her heart isn’t working as hard as it should, which pumps the blood to the lungs. Doctor said it’s no big deal, they’re just giving a little medicine to help it.
Kennadie is sedated and seems to be a little more comfortable. Her heart rate is down in the 160’s now, oxygen is good but she still has a fever.
I don’t know if I covered everything but I thought I’d share what I could now. We’re by her bedside and talking to her a lot. Steve and I will head home for the night. Sara & Tyler we’re lucky to get a room at the McDonald House. I’m hoping my poor Sara will finally get a little sleep tonight but I guarantee it won’t be much.
Please, lots of prayers for my ‘Dolly’.
I wish you all a Happy Thanksgiving!
UPDATE 33
November 22, 2022
It was a rough day for Kennadie. Sara finished weaning her off the methadone today. She expected some withdrawals but it became so much more. She was crying (the face of crying and little noises came out), her head was going back and forth steadily and she couldn’t keep her body still. She was sweating terribly also.
Sara tried everything she could, called every doctor at Childrens and was finally told to get her to Childrens Hospital.
911 was called. Our fantastic fire department was there within minutes. The Mayo ambulance arrived and life flight was called. With all of Kennadie’s complications it was decided to fly her directly to Children’s which they normally go straight to Essentia in Duluth.
All I know at this moment is that my little ‘Dolly’ made it there safely. Please keep her in your prayers. We feel so blessed to have so many people who care and pray for her. I will do Updates as soon as possible.
UPDATE 32
November 19, 2022
We are looking for an RN to give Sara some breaks or whatever hours they can work. At the present time, Sara really isn’t sleeping. Kennadie is not hard to take care of. She is on a ventilator, but the most work is giving her meds every 2 hours.
Please contact Sara through private messenger if you or someone you know may be interested. She can fill you in.
TylerSara Ellis
UPDATE 31
November 17, 2022
Kennadie and family arrived home last night. It was a long night for Sara, no sleep at all. Kennadie did fine. The respiratory therapist still has to come out and set up some of her equipment. Hopefully they’ll get that done soon.
Please anyone that can, come and show your support at Kennadie’s benefit on December 16 at 5:00 PM at the Cast Iron Supper Club.
Gina Stokke and I have raffle tickets, RJ, sport and cycle has tickets, a couple other places I will drop the tickets off at, Pro Tire and The Cast Iron. The drawing will be at the benefit for Kennadie. There will be a spaghetti feed, $15 at the door and five and under are free. There will be a couple really good country music bands/singers there that will be playing the whole time, JAKE BIRDSEYE MUSIC & GARY ALLEN!!
Of course Kennadie won’t be there. We are hoping to find a nurse for a few hours, so Sara could come to the benefit.
Keep the prayers coming please it’s a little scarier at home but she has lots of family support.
UPDATE 30
November 14, 2022
Well unfortunately I was right. Kennadie has an infection!! Kennadie had a fever this morning of 101. I hope they get a good antibiotic in her before she gets worse. An IV has to be put in to take blood, which will take a few days to find out what the infection is and for antibiotics given for at least 10 days. Our hopes of spending the actual Thanksgiving with the whole family is pretty much gone. Although I think we’ll wait for them to get home to celebrate.
Please keep your support and prayers coming for my little ‘Dolly’, we appreciate it so much. She’s a tough little girl, she’ll pull through this too!
UPDATE 29
November 12, 2022
Very short update today. The surgeon and trainer came in to take out Kennadie’s broviac line. Well, not quite sure which one did it for sure but the broke it off.
Surgery here she comes. Another incision to get infection. We hope and pray that doesn’t happen again and delay their homecoming.
I’m not sure if there’s anything that goes right for my poor little Dolly!
UPDATE 28
November 10, 2022
I’m sorry it’s taken so long to write. Most of you know I’ve had some terrible things happen in my life lately.
Kennadie has been doing very well. She’s still being weened off the Valium and methadone and has her withdrawals. Her heart rate still rises to between 150-200.
Kennadie has her machine now that she will be going home with. Everything is set up at home, doubles of everything she already has, waiting for them.
Tyler, Steve & I were trained a couple weeks ago on taking care of Kennadie. Checking for leaks in her equipment, changing her traech, cleaning the opening of the trach area, changing the neckband and how to bag her.
There is finally a light at the end of their tunnel!! Her discharge date is finally set for November 15, 2022. We will pray she stays healthy and there are no set backs between now and then.
UPDATE 27
October 14, 2022
As you know Kennadie had her tracheostomy on September 30, 2022. She has for the most part done quite well.
She has of course had another infection. After the tracheostomy she has had a fever, it was found that the infection is in the trachea. So on the antibiotics again.
Now, again the hardest part is weening off of the sedations and opioids. With the withdrawals, her heart rate has gone into the 200’s. The cardiologists say that as long as her oxygen is stable, they are not going to do anything with her heart at this point.
One lung is still scarred but also not doing anything, not sure if they even could.
Sara of course has not left Kennadie’s side. Tyler spends as much time as possible there.
Sara has recently been trained on Kennadie’s cares and we all have to get together and be trained on taking care of our little Dolly. She will come home with a different ventilator than she is on now, a smaller version.
As I always say, we appreciate your support and prayers.
UPDATE 26
September 30
Today was the big day. Doctors and nurses in talking and assessing Kennadie steadily. We had many questions, (well I did). Sara & Tyler had already talked to some of these doctors already but they come back in and asked if there’s were any other questions. Well, I’m going to ask!
The first surgery was to put in a broviac line. It’s like a port but more permanent. This was put in the very top of her leg, under the skin and comes out just below the chest.
When that was completed, the ENT took over and did the tracheostomy.
Surgery went good. We got to see that beautiful, sweet little face that we haven’t seen since shortly after birth.
Kennadie and all of us I guess,(mostly Sara) have a hard road ahead. We all have to be trained to take care of Kennadie and the trachea. She is supposed to have 24/7 care, someone awake with her at all times.
We hope now after she heals, is weened off all medication and we all know how to take care of her, she can come home. It is still going to be quite a while before this all happens but we have her and Sara coming home to look forward too!
Thanks everyone for your continued support and prayers.
UPDATE 25
September 29, 2022
I was down with Sara & Kennadie Monday-Wednesday. Kennadie was doing so good. Happy, doing 'her' little talk. She was so sweet & happy. Then Tuesday evening, Sara and I were walking in the hallway to go have dinner. We over heard a nurse ask another nurse who she was going to take care of that night. The girl did a ‘ugh sigh’ and said Kennadie. Sara and I had a bad feeling right then and there.
When we came back from dinner, there she was with Kennadie. Not very friendly, didn't like Sara telling her about Kennadie.
When we got to the room yesterday morning, Kennadie was just limp, so tired Sara couldn't wake her up. (She can always wake her up, just walking in the door Kennadie knows mom is there). Then we were told by the day nurse that the night nurse had to bag her 5 times!!
We were so mad and hurting for Kennadie because we know something happened that night. She had been so good since last Friday.
So then the doctors pretty much forced Sara into letting them put the breathing tube back in. Saying her episodes are to scary, (They weren’t until Tuesday night!) so now a traceastomy is to be put in.
Sara & I were both crying all day. We felt so bad for that sweet little girl and were so disgusted with everyone.
Sara held her all day Wednesday until they put the tube back in. They’ve been through so much.
We are heading down tomorrow. Kennadie is having the tracheostomy and also a more permanent line put in her chest or groin, tomorrow afternoon. Hopefully her chest.
They have had that breathing tube in out for so long that it's damaged her trachea. Today they also said she has a bacteria infection somewhere. They want to tap her shunt again. Sara is not wanting that. More holes and scars in her poor little head.
Thanks again for your support & prayers, she can use them tomorrow.
UPDATE 24
September 27, 2022
Kennadie has had some rough times in the past week. Bagged a few times. The worst was the other night, Sara was in the room and within seconds, Kennadie turned purple. The nurse froze, Sara said: “Bag Her”! The nurse pushed the staff assist button. All came running!! The doctor bagged her and by Gods Grace she pulled through again.
The doctor was in yesterday and talked with Sara & Tyler. It was said that these episodes were going to keep happening and one of these times they wouldn’t be able to bring her back. So it’s decided to have a tracheostomy. Not the outcome that we had hoped for but we will do whatever has to be done for our little ‘Dolly’!
She’s had a central line in her neck for for almost 2 months. When they do the tracheostomy, they will also be putting in a more permanent line in her chest as long as they can find a good vein.
If not it will have to go in her groin.
The surgeon for the new line and the ENT plus the OR room all need to be coordinated, but they are talking towards the end of this week.
It will be starting all over again but with going home in site. Probably not until November sometime but something to look forward too.
We all have to be trained on how to take care of her, the trachea and the ventilator. She will need 24 hour care. Someone has to watch her at all times. But she is worth it!
Thank you everyone for your prayers and support. We all have a long road ahead of us.
UPDATE 23
September 19, 2022
Short update again. I’ve spent as much time as I can with Sara & Kennadie. Steve and I were down last Saturday, Kennadie had a pretty good day. We got to hold her again. Of course smiles for grandpa. I’m Heading down again in the morning.
Well her heart rate continues to give Kennadie problems, even up to 200. She again has an infection somewhere. Her oxygen keeps dropping, down to 14 the other night, they had to bag her. When the monitor is on her hand it’s normal, when it’s on her foot it goes low.
Some say The infection may be in her lungs because the oxygen drops so low. The doctor has decided to bag her every couple hours to try to get the lung open.
Her secretions haven’t let up yet, so the doctors want her on her tummy to get the secretions out.
Today one of the doctors wants neurology to tap her shunt to see if the infection is in her brain again. The neurosurgeon doesn’t think she’s acting like the infection is in her brain so he doesn’t want to do it. It would also mean another surgery and intubating again. Setting her way back again if that would happen.
The rounding doctor has her on a schedule for bumps. They were not done on schedule yesterday so her withdrawals were pretty bad this morning.
Please continue your support and prayers. It seems to be needed more all the time.
Thank you all so much!!
UPDATE 22
September 10, 2022
Short update. Yesterday Kennadie’s breathing tube was pulled again. She is on the oxygen and bipap machine.
She is going through a lot of withdrawals as the last few days the nurse did a lot of unnecessary bumping. Very rarely does Kennadie get the same nurse so if they don’t know her they think she’s stressed because she moves around a lot. If I had IV’s all over, a catheter and breathing tube for as long as she did, I’d want to move around too!
The problem now is her heart rate. Kennadie’s normal heart rate is in the 130’s. It is now in the 180’s. We’re hoping when withdrawals are gone, which may be a while, that her heart rate will go back to normal. 
UPDATE 21
September 7, 2022
August 31 was a scary day. Kennadie had been doing wonderful on the oxygen and bipap. She was being weened off of all the meds she was on.
I went down to spend the night with Sara on Wednesday August 31. They had done an MRI early that morning. They said she had to be given quite a bit of medication to calm her for the MRI.
In the late afternoon I got to hold my little ‘Dolly’ for the first time in over a month. It felt so good to have her in my arms and cuddle with her again. Something didn’t seem right about her though. It was just kind of a blank stare, not the happy little girl she had been lately.
It was a wonderful evening though, out for dinner with Sara and my good friend Angie.
We went to bed around midnight and we’re awakened by Sara’s phone ringing at 6:30 am. “Come to the room!”
We ran to the elevator and up to her room. They were bagging Kennadie. Not anything I hope to ever see again.
The Doctor in charge told Sara she had to make a decision, intubate her again or well, you can guess.
Kennadie was back on her breathing tube within minutes.
Fast forward to yesterday September 6, 2022. I headed down to be with Sara and Kennadie.
There was a new lung doctor seeing Kennadie. She is wonderful!! She has ideas, is very positive and has given us hope. She talked with a new ENT who would see Kennadie. Yesterday, he went down her throat with a scope and did a procedure called superglottoplasty. (Sp?) He did a couple cuts behind her tongue to open the airway a little in that area.
Another doctor did a Botox procedure to hopefully cut down or stop her secretions which are very much a problem for her. 4 injections were put in her face. 2 on each side.
They started steroids that are also to help with secretions.
Again the poor little girl has come down with a fever. We’re hoping it’s from the procedure.
If everything goes as hoped, they will try removing the breathing tube again in 48 hours.
As always, we appreciate your support and your prayers are always needed.
UPDATE 20
August 25, 2022
Yesterday was a really big day for Kennadie and very stressful, scary and exciting day for all of us.
Kennadie was letting us know she was tired of and ready to get rid of her breathing tube. She has been having trials with the machine set to cpap so she was doing the breathing and had been doing great.
She has been weening down on her sedations and has been very awake. The rounding doctor said she was ready and he had faith in her.
With Kennadie’s Respiratory team, nurse, pastor, Sara and I in the room, her tube was pulled. She immediately was switched to bipap with oxygen through her nose.
Sara has been telling her she is a ‘Rock Star’ and so far she has proved that to us. She was breathing (with a lot of help from the bipap) but she was doing it!
Freedom, with all the tubes gone, Kennadie felt freedom. She was able to swing her arms and kick her feet.
Kennadie is by no means out of the woods. She will be weened off the bipap over a period of time along with her pain meds.
Time will tell the outlook for Kennadie and all of us. She’s still got a long scary road ahead of her. Each day is a miracle for this little girl. There are a lot of factors that will determine the outcome of Kennadie’s future.
As always, your support and prayers mean the world to us!
UPDATE 19
August 20, 2022
I’m spending as much time as possible down In the cities with Sara and Kennadie.
It’s been a rough but quiet few weeks. Kennadie has been very drugged. Each time her stats dropped they would rush in and push a few medications before giving her a chance to bring the stats back up herself. The nurse Thursday, when I was there, when Kennadie’s oxygen would drop, would say, “come on girl, you do it yourself”, and she did! Her oxygen would come up quickly. She was awake all day and we talked to and loved her all day. It was a rare day as the others usually bumped her fentanyl and oxycodone. ( yes, she’s back on them ).
Sara is with Kennadie all day 7 days a week. The only time she leaves her is to get something to eat once in a while and to try and sleep. I’m so proud of the mother she is.
A scope was put down Kennadie’s throat earlier in the week. Sara never seen the Ear Nose & Throat Doctor, but was relayed through the rounding doctor that Kennadie’s trachea is collapsing.
Steve came down Friday for a meeting with Kennadie’s team. The only Dr not there was the ENT. He did eventually join us by phone. He will be in on Monday to talk further with Sara.
Please say many many prayers for our little ‘Dolly’ as I call her. There are some very difficult decisions to be made. We all appreciate your support & prayers.
UPDATE 18
August 12, 2022
Kennadie has had a rough time again. I came down to stay with Sara yesterday.
Her head had started to sink in. We would think they were taking out too much fluid. No, it’s the opposite. Too hard for me to explain though.
Poor little darling aspirated again and now has lung phnemonia. A feeding tube was put in all the way through her stomach into her intestines. Many attempts were made but they finally got it in. The hopes were she would not aspirate, and she didn’t. But she could not keep her oxygen and respirations up.
Then last night they had to bag her. So she’s back to being on a breathing tube, several opioids, atavan, steroids and antibiotics.
When we talk to her, she blinks her eyes, so she’s not totally sedated. She knows her mommy that’s for sure.
I couldn’t get my phone out fast enough last night, Sara was able to hold her for a minute. Kennadie looked right at her mommy, moved her mouth, I’m sure telling her mom she loved her and then gave her the sweetest smile.
Now it’s another waiting game. We wait for the lung to heal and this time they’re going to slowly wean her off all the meds.
Thanks again for the support and continued prayers. 
UPDATE 17/2
At some point during the night or early morning Kennadie was turned to her tummy because of all the secretions coming out so much.
Well they left her on one side the whole time, so with the drooling and rubbing her cheek is raw.
Sara had to tell them to turn her. My poor little girl. It just breaks my heart the way she is being taken care of.
My feeling is, Kennadie needs to be in the NICU so at least she is getting watched closer. But I guess I’m not a doctor just a very worried and angry gramma. 
August 10, 2022
I had a wonderful day Monday until Tuesday morning with Sara & Kennadie. Things seemed to be going a bit
better.
They have her on oxycodone now to help withdrawals, which I don’t understand. Oxycodone is also a very powerful opioid. It just doesn’t make sense to me to take her off one powerful drug and put her through withdrawals so bad for a couple days and then put her on another to wean her off.
When I got there Monday and seen and talked to Kennadie, I know she knew gramma was there. Her eyes got big and her facial expression changed. I could just tell by her face she was happy I was there.
I had to come home Tuesday morning, gave my love to both of my girls and headed out thinking things were looking up. FaceTime was still good Tuesday evening. She looked good.
Sara didn’t get any phone calls during the night. She should have!! She got there this morning to bad news. Kennadie’s oxygen had gone way low during the night. She now has an infection in her lungs from the breathing tube. They now have her on her tummy so she doesn’t choke on her secretions.
They really don’t know what to do with the things that they have actually caused.
So again, please, and thank you. Your support and prayers are so very much appreciated
UPDATE 16
August 6, 2022
Yesterday was a hard day for Sara & Kennadie, well all of us. Kennadie had another MRI yesterday. They are going to keep an eye on the fluid out take and adjust it accordingly.
So it was decided by her team to take her off the breathing tube and her meds. While waiting for them to come and do that, Sara headed to the ER with a lot of fluid retention and like a burn on her arms. After an EKG and blood tests, she was given 3 days of Lacex and told he didn’t want to dig any further.
As she was heading back to the PICU, her phone rang. Kennadie’s whole team was with her and doing compressions. Poor Sara, what a horrible phone call to get when you’re almost back to her.
Our strong little girl pulled through but her heart rate was so high and they couldn’t keep her oxygen up. We’re kind of thinking she was going through withdrawals. Taking away her meds, especially fentanyl, I’m sure made the poor little girls body all screwed up.
It took all evening but they finally got her settled down. Her oxygen is still on the highest setting but for the moment things are going pretty good.
Please keep up the prayers. Everything helps our sweet little Kennadie and Sara & Tyler.
Yesterday & today’s pictures
August 4, 2022
Well Kennadie never had phnemonia. She had her MRI and they decided to wait a bit to see if she would need the shunt again.
She had another MRI and the Neurosurgeon decided she needed the shunt. So today gramma and Kennadie both had surgery. It was so hard not to be with Sara & Kennadie. But we’re both done (except I got to come home).
Kennadie is back in her room. The doctor said it went good, there was fluid that came out when they opened her up.
So there must have been a lot in there. We pray that this shunt will be fine and Kennadie will have a quick recovery.
As always thanks for your donations and prayers. You can only imagine how much they are appreciated.
UPDATE 14
July 31, 2022
Of course I jinxed it yesterday saying it was going good.
At 1:00 this morning I got a call from Sara, Kennadie was crying hysterically, I could actually hear her. Sara called 911 and it was decided Kennadie needed to be life flighted to the Childrens Hospital In Minneapolis. Within an hour Sara was called, they had to turn around and bring her to Essentia in Duluth. Her heart rate was too high.
It was determined Kennadie had phnemonia again. She still needed to be life flighted to Minneapolis. Essentia put a breathing tube in her without sedating her totally. Poor little girl was trying to cry with the tube in her mouth. The way they put the tube in, it pulled her upper lip up so high. Sara complained and they said that’s the way it’s done! NO it’s not!! I will try to get the picture of her on here.
She needed an IV to fly, they put one in her leg. Sara looked at her foot shortly after, it was beet red and hard as a rock. She called the nurse who called the doctor in. The vein had blown up in her leg. If sara wouldn’t have seen it, who knows what would have happened to her leg.
The IV still had to go in somewhere. They poked her everywhere. I don’t know if any of you have heard of this, but I haven’t, They put the IV IN HER HEAD!!
Finally she was ready to be life flighted to the hospital. She arrived about 11:00 am. That’s all we know at this point.
She is a strong little girl and with continued prayers she will pull through this again.
Thank you everyone!
UPDATE 13
Sorry it’s been such a long time. I’ve been busy and as some of you know I’ve been in a lot of pain.
Anyway, Kennadie is doing great since she was released. She’s up over 9 lbs now! She’s still on a feeding tube and oxygen. She had an MRI at the Childrens Hospital in St Paul last week. She has a ventricle that is large but for now they are just going to keep an eye on it with MRI’s. Hopefully she may never need a shunt again but time will tell.
Again, thank you all for your support and prayers. They are very much appreciated!
UPDATE 12
Well it’s been a long haul for our dear little Kennadie. A lot has happened but I will try to keep it short.
If you remember the last picture of her with those electrodes, we’ll they were RIPPED off her head on July 3rd. It was found out later that the person who did it was in a hurry. It’s so horrible I will not show the pictures of her head. Poor little girl can’t cry, it had to be absolute torture to her. Sara & Tyler had just went to the room to grab a bite to eat when this was done. So horrifying to come back and see this done to their baby. The wound doctor figures she will have some scars on her head from it.
On to some good news, kind of. Her shunt was taken out completely last week. It’s possible it was never needed in the first place. Many other things happened , too many to list.
Great news is, Kennadie came home today!! We hope and pray she doesn’t need to be admitted to any hospitals for a long time!!
Thank you for all your concern, donations and especially prayers. I truly believe it made her the strong little girl she is!!
UPDATE 11
Kennadie’s shunt is now draining out the top of her head. Today though, there was nothing draining so depending on what the MRI says, they may clamp it off to see if it is no longer draining and she may not or never did need one. She has had 2 blood transfusions because she was anemic. They are also checking for a brain abscess because her bp is fluctuating.
Doctors are also monitoring her brain for seizures and Sara overhead a nurse today say that Kennadie has meningitis!
Everyday it seems to be something new with our poor little girl.
UPDATE 10
Our sweet little Kennadie has to have surgery in the morning, Friday June 23, 2022. They are removing her shunt, which we found out caused the bacterial infections in her blood and brain, with a shunt that will drain outside her head. That will stay in for a few weeks until the infection has cleared up and then replace it with the internal shunt again.
We just FaceTimed with Sara & Tyler. Kennadie’s face is beat red. She has a fever. They gave her a blood transfusion today and wrapped her up to keep warm. They figure the fever is from being too hot. I certainly hope so.
So again, we’re asking for your prayers. We thank you for them and all your donations. You have no idea how much it is appreciated & helps them. God Bless you all!!
UPDATE 9
Kennadie was taken by Life flight Saturday morning to The Childrens Hospital again. Her breathing was really raspy. Essentia in Duluth would not take care of her.
In Mpls, the doctor called Sara as she was on her way there and said they weren’t going to try IV’s because Essentia said they tried several times and couldn’t get one in. Sara was not happy, she told the doctor that Essentia never even tried to get one in. The doctor called again and said they got 2 in easily!
Well the first thing they found was she had Covid. If that’s not bad enough today they found she has a brain and blood infection. They did immediate surgery and put her shunt out through her belly. She came back from surgery and she’s on a breathing machine. She Will be sedated for a few days.
They will be doing surgery once infection is gone to remove the shunt as the shunt caused the blood infection and putting a new one in.
Sara and Tyler are not even allowed to touch her or speak to her. They don’t want her arroused at all.
It has not been a good weekend for poor little Kennadie.
UPDATE 8
June 10,2022
Our baby girl is home!❤️❤️
What a wonderful day!
She’s on oxygen, feeding tube and a heart monitor.
We’re going to enjoy every moment with our little Kennadie!
UPDATE 7
Kennadie has been doing pretty well with her feeding tube. A few spit ups and acid reflux (one more thing she doesn’t need.) Her calorie intake has been lowered. She is now 7lbs. 2 Oz. She’s put on 2 pounds since birth.
Her shunt surgery was scheduled for Wednesday the 8th but Sara was told today it would be Monday the 6th at 7:30 am. So again, thank you everyone for your support and prayers. Please continue, it is all very much appreciated.
UPDATE 6
Kennadie had her feeding tube put in this afternoon. Everything went great. Next will be her shunt on June 8, 2022.
Your continued support and prayers are appreciated by the whole family.
UPDATE 5
Monday May 23 2022
Kennadie was scheduled for her shunt surgery this morning but was pushed out because of an emergency. They now have put that surgery off and will be doing her feeding tube on Wednesday. Every surgery she has, puts her closer to coming home we hope. She is gaining weight finally. She is now over 7 lbs!!
I had to put a couple pictures of her bath, she loves her baths!!
Sara, Tyler & I want to Thank everyone for your continued prayers and support. We truly appreciate and definitely need it all!
UPDATE 4
Monday May 16, 2022
Kennadie’s breathing has went back up to the 130’s. We don’t know if the ventricle has closed back up or if this is going to be her baseline. The fluid in her brain has increased. The neurology surgeons will decide the next move.
Sara has still not passed her kidney stone. She had a rough night and day today, as it must have been moving.
Now we wait and just love our little girl. Thank you for all your continued support and prayers. We all appreciate it so much!
UPDATE 3
It was an eventful day May 12. At 10:00 am we had a FaceTime prayer with the Hospital Chaplain for Kennadie. At 11:38 I got a phone call from Sara that they had just taken Kennadie for her procedure. We cried and cried together. At 1:38 the call came that Kennadie had made it through surgery. Doctor says the ventricle worked and is open 75% now where it was only open 20% before. They don’t know how long it will stay open, forever??? We hope but then they’re hoping the hole in her heart closes up now. It’s a waiting game.
As the afternoon progressed, Sara told me her side hurt so bad. I told her to go to the ER. She decided to go lay down but that didn’t work. She ended up in the ER. After blood and urine tests and then a CT scan, Sara has a kidney stone. They’re putting her on pain pills. This is at the present time 10:00 pm.
I pray tomorrow brings a better day for my sweet girls.
Thank you so much everyone for your kind generosity and prayers.
UPDATE 2
Our precious little Kennadie will have her first under anesthesia procedure tomorrow May 12. They will attempt to put a balloon in her ventricle to open it up. We pray it works out for her. She needs something to go right for her. We love her more than words can say.
Our sweet little Kennadie has gotten worse. She is on very high oxygen to slow her heart down. The cardiologist will be in tomorrow, Tuesday, to discuss the next move. The hole in her heart is too large. They most likely will have to close it up. It’s pushing too much blood to her lungs. She may also have to have surgery on the ventricle that is closed up. All is unknown for now except we know it’s getting worse. The Doctors at the Childrens Hospital are not even sure what to do, this is such a rare disease. So please, all the prayers you can give will be greatly appreciated.
Hi, my name is Lori Privette, I am Kennadie’s grandmother. As you will read, Sara will probably not be able to go back to work. Kennadie will be a full time job from everyday care to many visits to Minneapolis Childrens Hospital 2 1/2 hours away. Their bills are atrocious and gas costs them $100 each trip. Any donation would be appreciated.
Kennadie Marie Ellis
Was born April 6, 2022 to Sara & Tyler Ellis. We all have waited a long time for this little girl to come into the world.
Sara had preeclampsia for 5 out of the 8 months of pregnancy. One month before Kennadie’s due date of May first, Sara could hardly breath and was told to get to the hospital. While there, her blood pressure was so high 193/115, she was taken by ambulance to the Mother Baby Center in Minneapolis Mn. Kennadie was born 2 days later by an emergency c section on April 6.
Kennadie was taken from Sara right away where a team of doctors were waiting to see her.
Kennadie has a rare genetic condition. So rare there’s no name for it. They do know Chromosome # 6 has a piece missing and #2 has an extra piece. This disease has left our poor baby with fluid on the brain, most likely a shunt will be put in, an artery that has too much blood flow, an ventricle that is almost closed, a ballon or emergency surgery in the near future for that, a feeding tube through her nose now has to be replaced by a GI tube, surgery soon, cataracts & glaucoma. A trip to the University is in their future to evaluate her eyes for transplant but the Eye Doctor at Childrens Hospital is thinking she isn’t a candidate. Sara & Tyler we’re just recently told that Kennadie is also deaf.
The bills are building and will be for the rest of her lifetime. The gas to go back and forth is outrageous. Those trips will continue the rest of her life.
We would greatly appreciate any help anyone can give.
Organizer
Lori Privette
Organizer
Duluth, MN